Did you miss us?
It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).
Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.
Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.
Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.
She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.
In other news:
We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.
SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.
The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....
Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!
Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.
So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...
Rachel
Tuesday, June 30, 2009
Sunday, June 28, 2009
A Great Day
I can't figure Charlotte out. She starts to look zombiesque and then turns around and has a great day.
We went to the Home-based Business Bazaar and she didn't seem to do that well. We made the rounds and saw a few friends and RNR members like the Flanagans, Bridget, Evan, Malia, Xavier. We ended up in the nursery where we stayed for a while. There were some very nice things for sale and I know Granny did her share to make it a successful event.
Then we made our exit and I promptly pulled something in my back somewhere between the front door and the end of the sidewalk. I have no idea what I did but it started really bothering me by the time we got to the car.
When we got home, I fed Charlotte lunch and took some Vitamine "I." Granny was merciful and took CJ over the Uncle Kolbey's house so I could get the ice going in best Dr. Anna style, "20 minutes on, 20 minutes off."
While I sat on the couch trying to find a comfortable position, I found myself watching, Farrah's Story. This is not a show to watch if you're emotionally fragile but if you want a real look into the life of a cancer patient, with all the ups and down, the side effects, the hopes, the impact on families, etc...then watch it.
It really ran me down though and I found myself slipping into Seriously Bummedsville a few times. Kinda ruined my day. I told Rachel tonight that it's my every 6-month funk which is actually happening once or twice a month these days.
Rachel went in to teach a class and lead Brithday Bashes today and I went in to help with the first ever Awesome Adventure Party! I was pretty much useless with my back/shoulder so I worked front desk and the regular crew wowed them. It was a pretty successful party from what I saw/heard.
When we got home, Charlotte was already saying she wanted to go to bed so we brought her back home and got her ready. She ended up having a great day, pooping, eating, drinking, and having lots of educational fun with Granny. She was just pooped.
Update:
Some of you have asked me to repeat Deb Harper's contact information. If you haven't seen yet, Deb did a photo shoot with us last week and took some FABULOUS pics of Charlotte (me and Roger too). She is doing a "Pictures for Charlotte" fundraiser where she will take pics of your family (wherever you wish) and give you an edited CD of the prints in exchange for a donation of your choice for Charlotte.
If you are on Facebook, you can take a look at the pics on either mine or Roger's sites. We should have some posted to the Caring Bridge site soon.
Her contact info is: Deb Harper (804) 273-0064
Harper3902@aol.com
Update:
Aunt B and Uncle Not-So-Hairy headed off to the Hawaiian Islands this morning and Reesestrong (the doll) went with them. Can't wait to hear the stories and see the pics.
Extra positive thoughts should go out to the Reilly family as their son, Liam, who we met at the Neslon Clinic, passed away on Monday the 22nd. I say again, cancer really, really sucks!
On a more positive note, Nile, the boy with sickle cell anemia I met in the MRI room, has had a good go of things lately as he got to meet the Super Bowl Champ Steelers and received a bunch of stuff from his favorite team, the Washington Redskins. He even got a call from Santanna Moss (wide receiver). The absolute BEST thing is that he will be receiving his bone marrow transplant next week (I think)!
Here's his CB site: http://www.caringbridge.org/visit/nileprice The Redskins visit (Howiette the Hoggett actually) was caught on film and his expression when he realized what was going on was priceless (no pun intended). It's part of Channel 12 About Town. I've asked Nile to forward a link to the video.
Just got notice that Rachel posted another new update to CJ's journal. Hope you don't mind the multiple posts. Don't forget to read Rachel's last post about Deb Harper's photo shoots!
CJ has had two "walks" around the neighbourhood today and is currently next door with Granny working on some of those cookies. She watched "Mary Poppins" again today and when I asked her if she would like Mary Poppins to visit again and bring her tea set, she said "Yes!"
Everything depends on her numbers but hopefully we can get it planned soon.
Tomorrow is a very long day because we're starting a new drug in the mix and they have to do some extra tests and such. Heard from the Klauers that they will be having a long day of it too. It'll be a Dad's day by the looks of it. The two families are conspiring to open a Tiki Bar at the Nelson Clinic as part of our new "Adult Life" department! :-)
So here's to everyone fighting the good fight past, present, and future. I raise a toast to you all.
Now on to an ice cream party!
We went to the Home-based Business Bazaar and she didn't seem to do that well. We made the rounds and saw a few friends and RNR members like the Flanagans, Bridget, Evan, Malia, Xavier. We ended up in the nursery where we stayed for a while. There were some very nice things for sale and I know Granny did her share to make it a successful event.
Then we made our exit and I promptly pulled something in my back somewhere between the front door and the end of the sidewalk. I have no idea what I did but it started really bothering me by the time we got to the car.
When we got home, I fed Charlotte lunch and took some Vitamine "I." Granny was merciful and took CJ over the Uncle Kolbey's house so I could get the ice going in best Dr. Anna style, "20 minutes on, 20 minutes off."
While I sat on the couch trying to find a comfortable position, I found myself watching, Farrah's Story. This is not a show to watch if you're emotionally fragile but if you want a real look into the life of a cancer patient, with all the ups and down, the side effects, the hopes, the impact on families, etc...then watch it.
It really ran me down though and I found myself slipping into Seriously Bummedsville a few times. Kinda ruined my day. I told Rachel tonight that it's my every 6-month funk which is actually happening once or twice a month these days.
Rachel went in to teach a class and lead Brithday Bashes today and I went in to help with the first ever Awesome Adventure Party! I was pretty much useless with my back/shoulder so I worked front desk and the regular crew wowed them. It was a pretty successful party from what I saw/heard.
When we got home, Charlotte was already saying she wanted to go to bed so we brought her back home and got her ready. She ended up having a great day, pooping, eating, drinking, and having lots of educational fun with Granny. She was just pooped.
Update:
Some of you have asked me to repeat Deb Harper's contact information. If you haven't seen yet, Deb did a photo shoot with us last week and took some FABULOUS pics of Charlotte (me and Roger too). She is doing a "Pictures for Charlotte" fundraiser where she will take pics of your family (wherever you wish) and give you an edited CD of the prints in exchange for a donation of your choice for Charlotte.
If you are on Facebook, you can take a look at the pics on either mine or Roger's sites. We should have some posted to the Caring Bridge site soon.
Her contact info is: Deb Harper (804) 273-0064
Harper3902@aol.com
Update:
Aunt B and Uncle Not-So-Hairy headed off to the Hawaiian Islands this morning and Reesestrong (the doll) went with them. Can't wait to hear the stories and see the pics.
Extra positive thoughts should go out to the Reilly family as their son, Liam, who we met at the Neslon Clinic, passed away on Monday the 22nd. I say again, cancer really, really sucks!
On a more positive note, Nile, the boy with sickle cell anemia I met in the MRI room, has had a good go of things lately as he got to meet the Super Bowl Champ Steelers and received a bunch of stuff from his favorite team, the Washington Redskins. He even got a call from Santanna Moss (wide receiver). The absolute BEST thing is that he will be receiving his bone marrow transplant next week (I think)!
Here's his CB site: http://www.caringbridge.org/visit/nileprice The Redskins visit (Howiette the Hoggett actually) was caught on film and his expression when he realized what was going on was priceless (no pun intended). It's part of Channel 12 About Town. I've asked Nile to forward a link to the video.
Just got notice that Rachel posted another new update to CJ's journal. Hope you don't mind the multiple posts. Don't forget to read Rachel's last post about Deb Harper's photo shoots!
CJ has had two "walks" around the neighbourhood today and is currently next door with Granny working on some of those cookies. She watched "Mary Poppins" again today and when I asked her if she would like Mary Poppins to visit again and bring her tea set, she said "Yes!"
Everything depends on her numbers but hopefully we can get it planned soon.
Tomorrow is a very long day because we're starting a new drug in the mix and they have to do some extra tests and such. Heard from the Klauers that they will be having a long day of it too. It'll be a Dad's day by the looks of it. The two families are conspiring to open a Tiki Bar at the Nelson Clinic as part of our new "Adult Life" department! :-)
So here's to everyone fighting the good fight past, present, and future. I raise a toast to you all.
Now on to an ice cream party!
Friday, June 26, 2009
Low Key Days
A moment to breath between things.
Charlotte is hanging in there. She's definately starting to show signs of chemo side effects. Less energy, dark splotches under the eyes, etc... You wouldn't have known it by looking at the pics Deb took of her last night, though! As soon as they get all uploaded and to us, we'll share a few or you can go to Facebook and see them on my, Rachel's, or Deb Mead Harper's site.
Aunt Phyllis is back home and Granny and Gramps got here safe and sound yesterday.
Next week starts the next level o' crap. CJ finishes Accutane and starts on a new, far more toxic, drug. We have to mix it into applesauce or something but we have to wear double gloves and masks, prepare it in a room far away from food, have no air movement, click our heels three times and say, "Peace in our time" over and over again.
Rachel took CJ into the clinic this morning and it seemed to go well enough. Qdoba and Costco were also on the agenda. They saw her "other boyfriend" Cole at Qdoba which was a nice bonus.
Enjoying it while we can. The sequestering begins soon. Yesterday, she was saying something from the back of the car that I couldn't understand and she wouldn't say it louder even though I asked her three times. Finally I turned off the air and radio and heard her say, "Daddy, I don't like being alone." Where she got that or from where it came, I have no idea but I tried to reassure her several times that someone will always be with her. Could be time to have her sit down with Dr. Matt. Maybe it's the chemo talking. Not sure.
Don't forget the Bazaar tomorrow at St. Anne's Catholic Church in Ashland 10am-2pm.
Enjoy the heat!
Update:
If I were to describe the last few days with Charlotte in two words, I would say "low key". The good news is she seems to be weathering the current chemo regimen fairly well. No nausea, no vomiting, we FINALLY had a poop today (hooray for poop) but she's definitely been more tired and more likely to want to just "chill out". And that's OK!
We had a photo shoot last night with Deb Harper. She's a romp n' roll mom who also takes fabulous pictures. Some posts ago, we announced that she is doing "Pictures for Charlotte" where she will do a photo shoot with your family, edit the pictures, and give them to you on a CD in exchange for a donation in Charlotte's name. She has already booked 16 families (!!!) and last night it was our turn to mug for the camera. She has posted some of the pics on Facebook (they are awesome!!).
On a photography note, a Star Wars enthusiast group called the 501st Legion is going to be taking pictures (in costume, of course) at the next Rompy's Summer Concert Series. For a suggested donation of $5, you can get your picture taken with Darth Vader, storm troopers, or a whole host of characters from the Star Wars Brigade. Big thanks to Jim Woods, RMC soccer coach and RNR customer, for organizing this on Charlotte's behalf.
On a more clinical note:
Yesterday's and today's clinic visits both went pretty well. It was a busy day in the fishbowl but they still got us out of there by 11. We saw Reese and her mom the last two days. Sherry and I got to commisserate (sp?) a bit about the draining treatment regimens. Draining on our kids as well as us. We are advocating for some "adult life" services in addition to the fabulous child life services available at the hospital. I mean, why can't we get a little Tiki Bar put in the clinic? While our kids are getting their infusions, we can get ours...
But I digress...
After the hospital, we went to Qdoba for lunch and had a very chance meeting with Charlotte's friend Cole. He goes to Charlotte's preschool and they just happened to be getting lunch at the same time. They seemed to have a good time seeing one another and talking a bit. From there, it was a few more errands and now we are home. I'm quite exhausted and need a nap (or more caffeine?) and Charlotte seems to be keeping herself busy.
We found out that the Accutane will stop tonight. No chemo over the weekend and then on Monday she will need to go in for blood draws and THEN (assuming her counts are good) she will get the two meds (one oral and one IV) so it could be a L-O-N-G clinic day on Monday. At least they warned us this time.
Roger is working a MARATHON day at RNR with 4 classes in the AM, a birthday party, and THEN Kid's Night Out till 8:30. What a blast! I'm sure he will come home tired. My turn for the marathon day tomorrow.
Big reminder about the Home Based Business Bazaar at St. Ann's church from 10 AM-2 PM tomorrow. Big thanks to Jackie Plank for organizing this and all the vendors for putting it together. This is a great time to start your Christmas shopping or find the perfect birthday gifts for everyone on your list.
Gotta go seek out some mid-afternoon caffeine.
Update:
Ok, so if you didn't notice, Roger and I posted separate but similar journal entries only minutes apart. Yes, our strange synchronized brains work like that somehow...enjoy the weekend!
Rachel
Charlotte is hanging in there. She's definately starting to show signs of chemo side effects. Less energy, dark splotches under the eyes, etc... You wouldn't have known it by looking at the pics Deb took of her last night, though! As soon as they get all uploaded and to us, we'll share a few or you can go to Facebook and see them on my, Rachel's, or Deb Mead Harper's site.
Aunt Phyllis is back home and Granny and Gramps got here safe and sound yesterday.
Next week starts the next level o' crap. CJ finishes Accutane and starts on a new, far more toxic, drug. We have to mix it into applesauce or something but we have to wear double gloves and masks, prepare it in a room far away from food, have no air movement, click our heels three times and say, "Peace in our time" over and over again.
Rachel took CJ into the clinic this morning and it seemed to go well enough. Qdoba and Costco were also on the agenda. They saw her "other boyfriend" Cole at Qdoba which was a nice bonus.
Enjoying it while we can. The sequestering begins soon. Yesterday, she was saying something from the back of the car that I couldn't understand and she wouldn't say it louder even though I asked her three times. Finally I turned off the air and radio and heard her say, "Daddy, I don't like being alone." Where she got that or from where it came, I have no idea but I tried to reassure her several times that someone will always be with her. Could be time to have her sit down with Dr. Matt. Maybe it's the chemo talking. Not sure.
Don't forget the Bazaar tomorrow at St. Anne's Catholic Church in Ashland 10am-2pm.
Enjoy the heat!
Update:
If I were to describe the last few days with Charlotte in two words, I would say "low key". The good news is she seems to be weathering the current chemo regimen fairly well. No nausea, no vomiting, we FINALLY had a poop today (hooray for poop) but she's definitely been more tired and more likely to want to just "chill out". And that's OK!
We had a photo shoot last night with Deb Harper. She's a romp n' roll mom who also takes fabulous pictures. Some posts ago, we announced that she is doing "Pictures for Charlotte" where she will do a photo shoot with your family, edit the pictures, and give them to you on a CD in exchange for a donation in Charlotte's name. She has already booked 16 families (!!!) and last night it was our turn to mug for the camera. She has posted some of the pics on Facebook (they are awesome!!).
On a photography note, a Star Wars enthusiast group called the 501st Legion is going to be taking pictures (in costume, of course) at the next Rompy's Summer Concert Series. For a suggested donation of $5, you can get your picture taken with Darth Vader, storm troopers, or a whole host of characters from the Star Wars Brigade. Big thanks to Jim Woods, RMC soccer coach and RNR customer, for organizing this on Charlotte's behalf.
On a more clinical note:
Yesterday's and today's clinic visits both went pretty well. It was a busy day in the fishbowl but they still got us out of there by 11. We saw Reese and her mom the last two days. Sherry and I got to commisserate (sp?) a bit about the draining treatment regimens. Draining on our kids as well as us. We are advocating for some "adult life" services in addition to the fabulous child life services available at the hospital. I mean, why can't we get a little Tiki Bar put in the clinic? While our kids are getting their infusions, we can get ours...
But I digress...
After the hospital, we went to Qdoba for lunch and had a very chance meeting with Charlotte's friend Cole. He goes to Charlotte's preschool and they just happened to be getting lunch at the same time. They seemed to have a good time seeing one another and talking a bit. From there, it was a few more errands and now we are home. I'm quite exhausted and need a nap (or more caffeine?) and Charlotte seems to be keeping herself busy.
We found out that the Accutane will stop tonight. No chemo over the weekend and then on Monday she will need to go in for blood draws and THEN (assuming her counts are good) she will get the two meds (one oral and one IV) so it could be a L-O-N-G clinic day on Monday. At least they warned us this time.
Roger is working a MARATHON day at RNR with 4 classes in the AM, a birthday party, and THEN Kid's Night Out till 8:30. What a blast! I'm sure he will come home tired. My turn for the marathon day tomorrow.
Big reminder about the Home Based Business Bazaar at St. Ann's church from 10 AM-2 PM tomorrow. Big thanks to Jackie Plank for organizing this and all the vendors for putting it together. This is a great time to start your Christmas shopping or find the perfect birthday gifts for everyone on your list.
Gotta go seek out some mid-afternoon caffeine.
Update:
Ok, so if you didn't notice, Roger and I posted separate but similar journal entries only minutes apart. Yes, our strange synchronized brains work like that somehow...enjoy the weekend!
Rachel
Wednesday, June 24, 2009
Charlotte made her "Wish"
The last couple of days in the Nelson Clinic have been much smoother. We've been calling in ahead to give them "warning." Dr. Kahn wasn't there today so we didn't get to ask our latest questions but nurse April promised to corner him this afternoon and make sure he addresses them.
Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.
Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.
There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."
Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.
Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.
Make-a-Wish is coming by soon so we'll be one step closer to that.
Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)
Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.
The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.
The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.
Update:
So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.
In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.
Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.
Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?
Remember: two upcoming events for her birthday
1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.
That's all I have to report for now. Some very good news.
Rachel
Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.
Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.
There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."
Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.
Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.
Make-a-Wish is coming by soon so we'll be one step closer to that.
Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)
Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.
The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.
The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.
Update:
So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.
In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.
Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.
Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?
Remember: two upcoming events for her birthday
1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.
That's all I have to report for now. Some very good news.
Rachel
Monday, June 22, 2009
First IV Infusion of Topotecan
Back to reality,
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Sunday, June 21, 2009
Happy Father's Day!
Just wanted to put that out. It's a special one in the Reynolds' household this year.
All great dads are invited to march in the Ashland July 4th parade in the 1st ever Great Dads' Brigade. Meet at Henry Clay Elementary at around 10:30 and look for the banner! Should ba a fun time.
Charlotte is doing well and about to get a diaper change. Can't wait until she get's back in the mood to use the potty again.
That is all.
Rog
All great dads are invited to march in the Ashland July 4th parade in the 1st ever Great Dads' Brigade. Meet at Henry Clay Elementary at around 10:30 and look for the banner! Should ba a fun time.
Charlotte is doing well and about to get a diaper change. Can't wait until she get's back in the mood to use the potty again.
That is all.
Rog
Saturday, June 20, 2009
A Busy Day
Guess I wasn't kidding when I said, "so much for my 15-minutes."
Today was supposed to be a lazy day for Charlotte and I - putting up pictures in the office, shelf braces in the downstairs closet, eating cereal with no milk,"watching shows that Charlotte likes," things like that. Rachel went in to to do birthday parties and I offered to come help a little since the two "helpers" were new and could use a little extra on-the-job-training.
I was on the way down when I got a message from Rachel that Charlotte had been invited to the 1pm Birthday Bash so I turned around and came back to get her. We slathered sunscreen on her for the second time since the accutane has the wonderful effect (among others) of making her extra sensitive to the sun. We also changed her dress because some of the jam I had given to her on bread for lunch found it's way to her very nice blue dress that Aunt Phyllis had found for her this morning.
It was ok since I went and got that pink dress she wore in the Kourageous Kids (sp?) photo shoot. She looked adorable of course. While we were there, Michelle Reynolds' (wife of my cousin Jeff and mother of Savannah) mother came in with an interactive bear that was a gift from her "Women Of The Moose" organization. It's very cool with headphones and a DVD and I'm thinking I might have more fun firguring out how it works than Charlotte will once I do. Thanks to them for that!
Well, not long after that, we found out that one of the helpers wasn't coming in to work so I officially became "on the clock. It wasn't too diffucult to do since CJ was an actual guest of the first party. The hard part was going to be what to do with her during the second party. We'd figure that out when we got there.
That question was answered when CJ was sitting on the chair behind the front desk and suddenly started crying saying that she had hit her head on the chair. The padded chair that she had been lightly bumping her head against since she could sit there. What it actually was (probably) was the onset of some of the side effects of the Accutane. One is headaches. So while mommy got her an ice pack and held her while she cried (quite heavily actually), I got the car and pulled up to the front and Rachel loaded CJ into her seat.
She was pretty groggy and unhappy on the way home so we stopped at "Old McDonald's" and got a small milkshakeshake. Charlotte wanted to wait and "eat" it at home so we started off and before we got out of the parking lot she was asleep.
When we got home she woke up a little but I shooed everyone out of the house and got her comfortable on the couch and for one blissful hour (plus 15-min or so) the house was silent and Charlotte slept. I dozed too which was nice.
When Rachel got home, CJ woke up and complained about her head again. We tried to give her liquid Tylenol but she wouldn't have it and only wanted Meltaways. I think it was effective as much as a placebo as anything. CJ and I went to hang out in her "upstairs room" because she was still a little tired and wanted more quite time. After a little while of looking out at the trees getting buffeted around by the wind, we read a book and went back downstairs for dinner, meds, and "something Charlotte likes" on demand.
We did all that, watched some Thomas The Tank Engine, and got ready for bed. She read her books, threw them out of the bed, and at last check, was sining to herself in the dark.
By the way, the second party went very well and Rachel and Lindsey rocked on the BB without me.
I discovered a good way to get her to take the Accutane without changing the routine too much. I mixed it with the Amoxicillin she's used to taking already and she didn't have any more trouble with it than usual. The hard part is getting the Accutane out of the capsule and into the oral syringe. Rachel figured out that it's actually liquid in there! Who'd a thunk it? So now we pop a hole into the end, drip it into a large lid and mix it with the Amoxicillin, then take it all up into the syringe and then we do the usual dance of talking her into taking it.
Here's something fun to do if you live, or plan to be in Grandpa's and Juanita Bonita's neck of the woods next month:
The Good Shepherd lutheran Church in Morristown, TN is sponsoring of a Benefit Pancake breakfast along with Applebees Resturant from 7-10 am on July 18, 2009 for Charlotte at the Morristown location on AJ Highway. Tickets cost $5.00/person for all you can eat pancakes, bacon, coffee. Applebee's provides the cook and food and the members of the Church will wash dishes and wait on customers. Tickets will be available at the door or from Charlotte's grand parents (Grandpa and Juanita Bonita) at the Hamblen County Car Club Cruise-In on Saturday night or the Church.
Next events for us here in Ashland are the Home Business Bazaar at St. Anne's Catholic Church on June 27th and the July 4th parade and pahtay! I've been asked to be a judge in the best apple pie contest and I want to get as many of the nominated great dads together as possible to march in the parade. It's completely casual and doesn't take long to walk. It's mostly for the kids (and bassett hounds).
Did I mention that as soon as Charlotte "rings the bell" we're getting a dog? Hanover SPCA of course.
So go watch "Little Miss Sunshine" twelve times on the Oxygen channel.
Today was supposed to be a lazy day for Charlotte and I - putting up pictures in the office, shelf braces in the downstairs closet, eating cereal with no milk,"watching shows that Charlotte likes," things like that. Rachel went in to to do birthday parties and I offered to come help a little since the two "helpers" were new and could use a little extra on-the-job-training.
I was on the way down when I got a message from Rachel that Charlotte had been invited to the 1pm Birthday Bash so I turned around and came back to get her. We slathered sunscreen on her for the second time since the accutane has the wonderful effect (among others) of making her extra sensitive to the sun. We also changed her dress because some of the jam I had given to her on bread for lunch found it's way to her very nice blue dress that Aunt Phyllis had found for her this morning.
It was ok since I went and got that pink dress she wore in the Kourageous Kids (sp?) photo shoot. She looked adorable of course. While we were there, Michelle Reynolds' (wife of my cousin Jeff and mother of Savannah) mother came in with an interactive bear that was a gift from her "Women Of The Moose" organization. It's very cool with headphones and a DVD and I'm thinking I might have more fun firguring out how it works than Charlotte will once I do. Thanks to them for that!
Well, not long after that, we found out that one of the helpers wasn't coming in to work so I officially became "on the clock. It wasn't too diffucult to do since CJ was an actual guest of the first party. The hard part was going to be what to do with her during the second party. We'd figure that out when we got there.
That question was answered when CJ was sitting on the chair behind the front desk and suddenly started crying saying that she had hit her head on the chair. The padded chair that she had been lightly bumping her head against since she could sit there. What it actually was (probably) was the onset of some of the side effects of the Accutane. One is headaches. So while mommy got her an ice pack and held her while she cried (quite heavily actually), I got the car and pulled up to the front and Rachel loaded CJ into her seat.
She was pretty groggy and unhappy on the way home so we stopped at "Old McDonald's" and got a small milkshakeshake. Charlotte wanted to wait and "eat" it at home so we started off and before we got out of the parking lot she was asleep.
When we got home she woke up a little but I shooed everyone out of the house and got her comfortable on the couch and for one blissful hour (plus 15-min or so) the house was silent and Charlotte slept. I dozed too which was nice.
When Rachel got home, CJ woke up and complained about her head again. We tried to give her liquid Tylenol but she wouldn't have it and only wanted Meltaways. I think it was effective as much as a placebo as anything. CJ and I went to hang out in her "upstairs room" because she was still a little tired and wanted more quite time. After a little while of looking out at the trees getting buffeted around by the wind, we read a book and went back downstairs for dinner, meds, and "something Charlotte likes" on demand.
We did all that, watched some Thomas The Tank Engine, and got ready for bed. She read her books, threw them out of the bed, and at last check, was sining to herself in the dark.
By the way, the second party went very well and Rachel and Lindsey rocked on the BB without me.
I discovered a good way to get her to take the Accutane without changing the routine too much. I mixed it with the Amoxicillin she's used to taking already and she didn't have any more trouble with it than usual. The hard part is getting the Accutane out of the capsule and into the oral syringe. Rachel figured out that it's actually liquid in there! Who'd a thunk it? So now we pop a hole into the end, drip it into a large lid and mix it with the Amoxicillin, then take it all up into the syringe and then we do the usual dance of talking her into taking it.
Here's something fun to do if you live, or plan to be in Grandpa's and Juanita Bonita's neck of the woods next month:
The Good Shepherd lutheran Church in Morristown, TN is sponsoring of a Benefit Pancake breakfast along with Applebees Resturant from 7-10 am on July 18, 2009 for Charlotte at the Morristown location on AJ Highway. Tickets cost $5.00/person for all you can eat pancakes, bacon, coffee. Applebee's provides the cook and food and the members of the Church will wash dishes and wait on customers. Tickets will be available at the door or from Charlotte's grand parents (Grandpa and Juanita Bonita) at the Hamblen County Car Club Cruise-In on Saturday night or the Church.
Next events for us here in Ashland are the Home Business Bazaar at St. Anne's Catholic Church on June 27th and the July 4th parade and pahtay! I've been asked to be a judge in the best apple pie contest and I want to get as many of the nominated great dads together as possible to march in the parade. It's completely casual and doesn't take long to walk. It's mostly for the kids (and bassett hounds).
Did I mention that as soon as Charlotte "rings the bell" we're getting a dog? Hanover SPCA of course.
So go watch "Little Miss Sunshine" twelve times on the Oxygen channel.
Thursday, June 18, 2009
Her Protocol
Very quick update,
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.
If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.
Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow
Gotta go wake up the princess.
Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.
First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.
Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!
Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.
After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.
We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.
Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.
At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.
In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:
EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!
In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.
Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.
I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!
I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.
Rachel
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.
If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.
Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow
Gotta go wake up the princess.
Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.
First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.
Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!
Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.
After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.
We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.
Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.
At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.
In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:
EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!
In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.
Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.
I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!
I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.
Rachel
Tuesday, June 16, 2009
More Good Days
The good days keep piling up. Charlotte had a great morning of reading, drawing, and playing. Phyllis reorganized the office and I helped her get the old futon mattress under the new one. Now we have a very tall bed! Can't wait to sleep on it.
Rachel worked Camp Rompy this morning and I stayed home. Among other things, I went to the post office to send out some letters including a small package to PIXAR Animation Studios with some pictures that CJ drew and a thank you letter. Extra shout out to Sean Feeley for helping out with all that.
Meredith and Anya came by to pick up Charlotte in the early afternoon and the three of them went to their house, put on some girly clothes (including tutus) and went to a dance class! The picture is attached.
While CJ tripped the light fantastic, I collected some leaves and twigs for the kindling pile and did some wood chopping which always makes me feel manly!
Then it was off to Romp n' Roll to teach the afternoon/evening classes. Charlotte came down to visit with Mommy and Phyllis who were on their way, eventually, to Bed Bath & (WAY) Beyond. When I got home, Charlotte was hanging out, watching Caillou (who looks an awful lot like her friend, Larson, did as a very young boy).
She gave a big yawn and went right to bed when mommy asked her to. She read her books for a while and when she was through, she tossed them out onto the floor, as she is prone to do. That's usually my cue to ask her if I can turn out the light. She usually says yes and is zonked in a bout two minutes.
So guess what?!? We have a procedure planned! CJ and I will be going in to get the LP (lumbar puncture) Thursday. Other than that, what do YOU think? We don't know anything. We'll probably know more very soon though.
The possibility of going to Shands in Jacksonville, FL for proton beam radiation is very high. I'm pretty sure we would stay in Jacksonville and make occasional trips down to Daytona Beach to visit Grasnny and Gramps (or they would come to us). My dad has volunteered his palatial RV for us to stay in for at least a little while since CJ likes the "campin' truck" and would probably be comfortable there. We will also explore Ronald McDonald house and other Hospitality House-type places.
I'm guessing but treatments would probably run 6-8 weeks. Rachel and I would set up our schedule so that one of us was down there constantly and then we would switch off every two or three weeks (we think).
All just conjecture. We really don't have a clue yet.
Cluelessly yours,
Rog
Rachel worked Camp Rompy this morning and I stayed home. Among other things, I went to the post office to send out some letters including a small package to PIXAR Animation Studios with some pictures that CJ drew and a thank you letter. Extra shout out to Sean Feeley for helping out with all that.
Meredith and Anya came by to pick up Charlotte in the early afternoon and the three of them went to their house, put on some girly clothes (including tutus) and went to a dance class! The picture is attached.
While CJ tripped the light fantastic, I collected some leaves and twigs for the kindling pile and did some wood chopping which always makes me feel manly!
Then it was off to Romp n' Roll to teach the afternoon/evening classes. Charlotte came down to visit with Mommy and Phyllis who were on their way, eventually, to Bed Bath & (WAY) Beyond. When I got home, Charlotte was hanging out, watching Caillou (who looks an awful lot like her friend, Larson, did as a very young boy).
She gave a big yawn and went right to bed when mommy asked her to. She read her books for a while and when she was through, she tossed them out onto the floor, as she is prone to do. That's usually my cue to ask her if I can turn out the light. She usually says yes and is zonked in a bout two minutes.
So guess what?!? We have a procedure planned! CJ and I will be going in to get the LP (lumbar puncture) Thursday. Other than that, what do YOU think? We don't know anything. We'll probably know more very soon though.
The possibility of going to Shands in Jacksonville, FL for proton beam radiation is very high. I'm pretty sure we would stay in Jacksonville and make occasional trips down to Daytona Beach to visit Grasnny and Gramps (or they would come to us). My dad has volunteered his palatial RV for us to stay in for at least a little while since CJ likes the "campin' truck" and would probably be comfortable there. We will also explore Ronald McDonald house and other Hospitality House-type places.
I'm guessing but treatments would probably run 6-8 weeks. Rachel and I would set up our schedule so that one of us was down there constantly and then we would switch off every two or three weeks (we think).
All just conjecture. We really don't have a clue yet.
Cluelessly yours,
Rog
Monday, June 15, 2009
Great Richmond Dad and Other Good Stuff
What an awsome day! First off, my Uncle Jerry and Aunt Jeanne came by the store looking to take us out to lunch. Lunch is always good. They came by at the exact right time because I was at home and had just finished doing a bunch of stuff that needed to get done so I was available.
So I packed up Charlotte headed down. We went to Casa Grande (mmmm.....) and lunch was very good. Rachel had to leave early to teach but CJ and I stayed for a good long while. Charlotte is so good at entertaining herself, it's amazing!
Then, just as we were getting up to leave I get a call from Rachel at the store checking to see if I had received the text that Annette had sent. I really hadn't been parying attention so, no, I hadn't.
Seems Kate from Richmondmom.com called and I should call her right away. So I did. Looks like we won the Great Richmond Dad contest! (And I do mean "we.") Thanks to all who voted and made it possible. It's very exciting!!!
We're going to have an official event at the Chick-fil-a right here on Friday evening sometime. I'm sure when but there will be an announcement on the Richmondmom.com site.
Back to reality: Rachel went to talk to Dr. Matt this morning and she always feels better when she does. The rest of the day has been very busy with camp, classes, and all that at Romp n' Roll, and CJ drawing lots of pictures at home. Aunt Phyllis kept her dynamo ways up and with only a little help from me, had a new shelving unit installed in the upstairs office closet.
A very odd thing, the next door neighbor took it upon herself to trim some branches off of our trees...on our property...without asking us. Now she's an uber gardener and all that but Gramps is a Master Gardener and he knows more about that sort of stuff than she will ever forget. I'm positive she thought she was doing us a favor but I think it was a bit presumptuous. What do you think? Whatever, I certainly have other things to worry about.
Saturday was odd. We had the morning to ourselves and we went to Poor Farm Park to play. As we got there, we nooticed other kids coming to a birthday party at the shelter right next to the playground. Chalrotte was very into the playground untill the kids really started showing up in numbers. She got manhandled by a few kids wanting to get around her and that kind of turned her off to the whole thing. We left after less than a half hour.
Then we went to downtown Ashland to see the Farmer's Market. A woman at a booth heard her name and said, "Is that THE Charlotte from St. James?" I'll say it again, I think CJ is over the whole minor celebrity thing. We did get to eat big marshmallow treats, though! YUM!
Gotta go teach Monday night classes,
WOOHOO!
Rog
Update:
Have I mentioned what a great day this has been? Besides my atrocious spelling, we've continued to have good stuff happen.
Charlotte had a great day playing with me, Uncle Kolbey, and Aunt Phyllis. (Right now she's sitting in bed, singing to herself; being cute as humanly possible.) She's also been drawing pictures to send to Pixar Studios as part of her "thank you" package for all the stuff they sent her.
We had two rather full classes this afternoon, both of which were not even on the schedule originally. Both were "requested" by groups and have filled out the evening nicely. One class, "Rhythm n' Roll" at 6:30, is nothing but girls! Never had that happen before. They're every bit as rowdy as the boys and don't listen even more! (did that make sense?) Total hoot! Gonna be a great session.
Tonight, Charlotte and I got to talk to Nile and little sister Olivia via Skype and I got to see the autographed Super Bowl champion footballs he got at the bowling event with the Pittsburgh Steelers. Dang it! He got to meet the Bus! :-)
Thank you all for the well wishes and comments. I really appreciate it.
Did you see how they (Richmondmom.com) pulled you along in the best American Idol fashion with the teases and first letter of the name revealed to get you to click deeper into the website and all that? It was awesome!! :-) Kudos to Richmondmom.com.
There's going to be an offical "award" event at Chick-fil-a on Friday evening. Stay tuned for more details.
Last but not least, we did NOT hear from Dr. Kahn today about THE PLAN. Feel free to nudge him to call us tomorrow if you see him. We are so over NOT having a road map. Someone just point or something and say, "Go there!" And we will. I promise.
Beside that, it's been a pretty good last few days. Thanks to all our customers for coming out and registering for classes, thanks to everyone who has been lining up to do things for us, thanks for the donations that are still coming in at a pretty good clip, thanks for the chocolate chip cookies and the home made mac & cheese with the bread crust topping! The thanking will never stop.
Time for milk and said cookies!
Rog
So I packed up Charlotte headed down. We went to Casa Grande (mmmm.....) and lunch was very good. Rachel had to leave early to teach but CJ and I stayed for a good long while. Charlotte is so good at entertaining herself, it's amazing!
Then, just as we were getting up to leave I get a call from Rachel at the store checking to see if I had received the text that Annette had sent. I really hadn't been parying attention so, no, I hadn't.
Seems Kate from Richmondmom.com called and I should call her right away. So I did. Looks like we won the Great Richmond Dad contest! (And I do mean "we.") Thanks to all who voted and made it possible. It's very exciting!!!
We're going to have an official event at the Chick-fil-a right here on Friday evening sometime. I'm sure when but there will be an announcement on the Richmondmom.com site.
Back to reality: Rachel went to talk to Dr. Matt this morning and she always feels better when she does. The rest of the day has been very busy with camp, classes, and all that at Romp n' Roll, and CJ drawing lots of pictures at home. Aunt Phyllis kept her dynamo ways up and with only a little help from me, had a new shelving unit installed in the upstairs office closet.
A very odd thing, the next door neighbor took it upon herself to trim some branches off of our trees...on our property...without asking us. Now she's an uber gardener and all that but Gramps is a Master Gardener and he knows more about that sort of stuff than she will ever forget. I'm positive she thought she was doing us a favor but I think it was a bit presumptuous. What do you think? Whatever, I certainly have other things to worry about.
Saturday was odd. We had the morning to ourselves and we went to Poor Farm Park to play. As we got there, we nooticed other kids coming to a birthday party at the shelter right next to the playground. Chalrotte was very into the playground untill the kids really started showing up in numbers. She got manhandled by a few kids wanting to get around her and that kind of turned her off to the whole thing. We left after less than a half hour.
Then we went to downtown Ashland to see the Farmer's Market. A woman at a booth heard her name and said, "Is that THE Charlotte from St. James?" I'll say it again, I think CJ is over the whole minor celebrity thing. We did get to eat big marshmallow treats, though! YUM!
Gotta go teach Monday night classes,
WOOHOO!
Rog
Update:
Have I mentioned what a great day this has been? Besides my atrocious spelling, we've continued to have good stuff happen.
Charlotte had a great day playing with me, Uncle Kolbey, and Aunt Phyllis. (Right now she's sitting in bed, singing to herself; being cute as humanly possible.) She's also been drawing pictures to send to Pixar Studios as part of her "thank you" package for all the stuff they sent her.
We had two rather full classes this afternoon, both of which were not even on the schedule originally. Both were "requested" by groups and have filled out the evening nicely. One class, "Rhythm n' Roll" at 6:30, is nothing but girls! Never had that happen before. They're every bit as rowdy as the boys and don't listen even more! (did that make sense?) Total hoot! Gonna be a great session.
Tonight, Charlotte and I got to talk to Nile and little sister Olivia via Skype and I got to see the autographed Super Bowl champion footballs he got at the bowling event with the Pittsburgh Steelers. Dang it! He got to meet the Bus! :-)
Thank you all for the well wishes and comments. I really appreciate it.
Did you see how they (Richmondmom.com) pulled you along in the best American Idol fashion with the teases and first letter of the name revealed to get you to click deeper into the website and all that? It was awesome!! :-) Kudos to Richmondmom.com.
There's going to be an offical "award" event at Chick-fil-a on Friday evening. Stay tuned for more details.
Last but not least, we did NOT hear from Dr. Kahn today about THE PLAN. Feel free to nudge him to call us tomorrow if you see him. We are so over NOT having a road map. Someone just point or something and say, "Go there!" And we will. I promise.
Beside that, it's been a pretty good last few days. Thanks to all our customers for coming out and registering for classes, thanks to everyone who has been lining up to do things for us, thanks for the donations that are still coming in at a pretty good clip, thanks for the chocolate chip cookies and the home made mac & cheese with the bread crust topping! The thanking will never stop.
Time for milk and said cookies!
Rog
Sunday, June 14, 2009
Crazy Weekend
I guess it's my turn to update today. It's been kind of a crazy weekend in many ways.
Friday, I kind of had the day to "myself". I ran errands for work and home, went to visit our friend Wyatt in the hospital who (poor thing!) was bit by a copperhead snake! Wyatt just turned four and is such a dear. It was sad to see him in pain in the hospital. Good news is the antivenom seems to be working and he went home for recuperation that day (basically just 24 hours in the hospital). Finally capped the day off with a long-overdue pedicure (yay!) at Divas.
When I got home, I found Meredith and Phyllis organizing Charlotte's new art/table area. Meredith had this great idea to use the wall space to install a peg board (painted to match our decor) with some fun organizer containers for storing note pads, books, crayons, art gear, etc. So far it's looking great. Between that and moving a few other pieces of furniture around, the downstairs is looking WAY more organized.
Saturday was a morning of work for me. Then I read Roger's post and made the mistake of going to Zach's Caring Bridge site which sent me into a seriously emotional tailspin. I think between all the frustration of the week combined with his very sad situation, I just lost it. Fortunately, Roger and I were already planning a date for the evening and my aunt and I spent the afternoon getting some retail therapy. We went for a mini shopping spree at Kohl's and got some great deals. Got a few other necessities while we were out and about and headed home.
When I got home, Roger was making Charlotte's dinner and we still hadn't settled on any evening plans. I did some research and realized that the Dance Space was having one of their Swing Dance evenings SOOO....we got kinda dressed up, went to Mekong for dinner (one of my faves) and then went upstairs to the Dance Space. For those who have never been before, basically you just pay $7 per person (on the honor system) and the dance floor is open to anyone. They play swing music for about 4 hours. There are apparently some "regulars" there and folks at all levels of dancing ability. For those who don't know, Roger and I have taken a few lessons (back in the day) and we do love to go dancing. Just haven't done it in a while. It took us a little while to find our "groove" again but it was a LOT of fun, great exercise, and I think we picked up a few new moves watching the others. It really was a great evening.
This morning and afternoon has been all about playing catch up. The office has needed a big cleaning out for a while so that has been the biggest project. Roger raided the neighbors new wood pile (they just cut down a few trees and let him take whatever he liked for firewood) and Charlotte is puttering around the house staying very busy. She's currently playing with Uncle Kolbey.
I am hopeful that this week will give us some more answers because the last week was definitely one of the most frustrating I've spent in this whole process. I'm just tired of living in limbo and I don't want that tumor to have ANY more chance of growing. While I tell myself to live one day at a time (and really that's all I can do), I can't keep living like this. Emotional fatigue has definitely set in and it's driving me CRAZY. Thanks again to everyone offering moral and emotional support. The counselor and I have a "date" tomorrow morning and (as usual) it will be well-timed.
Hope everyone's enjoying the weekend. The weather is fabulous!
Rachel
Friday, I kind of had the day to "myself". I ran errands for work and home, went to visit our friend Wyatt in the hospital who (poor thing!) was bit by a copperhead snake! Wyatt just turned four and is such a dear. It was sad to see him in pain in the hospital. Good news is the antivenom seems to be working and he went home for recuperation that day (basically just 24 hours in the hospital). Finally capped the day off with a long-overdue pedicure (yay!) at Divas.
When I got home, I found Meredith and Phyllis organizing Charlotte's new art/table area. Meredith had this great idea to use the wall space to install a peg board (painted to match our decor) with some fun organizer containers for storing note pads, books, crayons, art gear, etc. So far it's looking great. Between that and moving a few other pieces of furniture around, the downstairs is looking WAY more organized.
Saturday was a morning of work for me. Then I read Roger's post and made the mistake of going to Zach's Caring Bridge site which sent me into a seriously emotional tailspin. I think between all the frustration of the week combined with his very sad situation, I just lost it. Fortunately, Roger and I were already planning a date for the evening and my aunt and I spent the afternoon getting some retail therapy. We went for a mini shopping spree at Kohl's and got some great deals. Got a few other necessities while we were out and about and headed home.
When I got home, Roger was making Charlotte's dinner and we still hadn't settled on any evening plans. I did some research and realized that the Dance Space was having one of their Swing Dance evenings SOOO....we got kinda dressed up, went to Mekong for dinner (one of my faves) and then went upstairs to the Dance Space. For those who have never been before, basically you just pay $7 per person (on the honor system) and the dance floor is open to anyone. They play swing music for about 4 hours. There are apparently some "regulars" there and folks at all levels of dancing ability. For those who don't know, Roger and I have taken a few lessons (back in the day) and we do love to go dancing. Just haven't done it in a while. It took us a little while to find our "groove" again but it was a LOT of fun, great exercise, and I think we picked up a few new moves watching the others. It really was a great evening.
This morning and afternoon has been all about playing catch up. The office has needed a big cleaning out for a while so that has been the biggest project. Roger raided the neighbors new wood pile (they just cut down a few trees and let him take whatever he liked for firewood) and Charlotte is puttering around the house staying very busy. She's currently playing with Uncle Kolbey.
I am hopeful that this week will give us some more answers because the last week was definitely one of the most frustrating I've spent in this whole process. I'm just tired of living in limbo and I don't want that tumor to have ANY more chance of growing. While I tell myself to live one day at a time (and really that's all I can do), I can't keep living like this. Emotional fatigue has definitely set in and it's driving me CRAZY. Thanks again to everyone offering moral and emotional support. The counselor and I have a "date" tomorrow morning and (as usual) it will be well-timed.
Hope everyone's enjoying the weekend. The weather is fabulous!
Rachel
Saturday, June 13, 2009
Mishy Matchy
Strange request,
I have been deeply touched by one particular Caringbridge story of a boy named Zachary White. He passed away this week and the story of how his community is pulling together to support the family is as inspiring (if not more so) as ours.
The visitation is tomorrow, Sunday, and in the latest post (If I wasn't posting as therapy myself, I would have absolutely no idea how they can be doing it), they talked about how Zach got angry when they tried to explain why his clothes needed to match. I think the term he used was "mishy matchy." They suggested to friends and family that Zach would get a kick out of it if people wore mis-matching clothes to the viewing.
It seems like kind of a cool thing to do so I plan to do it tomorrow. I was hoping some of you might join me. I'll be taking pics to post.
You could read their story directly if you like. I'm sure they are completely overwhelmed right now so maybe just a quick blurb on their CB site would be sufficient. http://www.caringbridge.org/visit/zacharywhite
One thing with which I'm struggling is the desire to support others during what is an intensly personal and private time. I know I would want people to kind of leave me alone and at the same time it feels so good to type things out and know there are so many people out there supporting us that I get conflicted. I think contacting the Whites or whoever should be low key and the mere fact that there are so many hits on the page and there is so much positive energy floating around really helps those of us dealing with the things we've had to go through.
That being said, I'm at least wearing two different kinds of shoes tomorrow for Zach so I can be un-"mishy matchy!"
I have been deeply touched by one particular Caringbridge story of a boy named Zachary White. He passed away this week and the story of how his community is pulling together to support the family is as inspiring (if not more so) as ours.
The visitation is tomorrow, Sunday, and in the latest post (If I wasn't posting as therapy myself, I would have absolutely no idea how they can be doing it), they talked about how Zach got angry when they tried to explain why his clothes needed to match. I think the term he used was "mishy matchy." They suggested to friends and family that Zach would get a kick out of it if people wore mis-matching clothes to the viewing.
It seems like kind of a cool thing to do so I plan to do it tomorrow. I was hoping some of you might join me. I'll be taking pics to post.
You could read their story directly if you like. I'm sure they are completely overwhelmed right now so maybe just a quick blurb on their CB site would be sufficient. http://www.caringbridge.org/visit/zacharywhite
One thing with which I'm struggling is the desire to support others during what is an intensly personal and private time. I know I would want people to kind of leave me alone and at the same time it feels so good to type things out and know there are so many people out there supporting us that I get conflicted. I think contacting the Whites or whoever should be low key and the mere fact that there are so many hits on the page and there is so much positive energy floating around really helps those of us dealing with the things we've had to go through.
That being said, I'm at least wearing two different kinds of shoes tomorrow for Zach so I can be un-"mishy matchy!"
Friday, June 12, 2009
An Update
Charlotte sat on the couch and ate bon bons most of the day.
Not really.
She got to do a story time with her Montessori class via the Hopecam. That was very nice.
I went to Romp n' Roll to teach the Babies! preview class and it was very cool. There was also a Birthday Bash which was a total hoot!
Rachel sat on the couch and ate bon bons all day.
Not really. (She's dictating these things to me as she sits next to me)
She talked to insurance people trying to decipher whether or not the proton beam radiation procedure would be covered and where. Turns out MD Anderson IS in network but certain physicians (the important ones for us) are not. Shands in Gainesville, has a proton clinic in Jacksonville
(remember last time Rachel was dictating from behind/beside and I had to remove her spleen via her ear?!?!?!?)
So anyway, the Shands clinic in Jacksonville is in network as well. There are also hospitals in Boston, Indiana, and California. That's about all of that kind of news for now.
Rachel also went to the bank and deposited over $5000 into Charlotte's account! Thanks so much to everyone. The foundation plans are evolving ever so slowly but evolving they are.
She also got to get her toes done. Nice little distraction.
Aunt Phyllis and Meredith put up the special board next Cj's new table and that is looking very good. The rest of the house looks amazing under the cleaning and organizational skills of Phyllis.
Aunt Phyllis is an exceptionally intelligent and enlightened person. Imagine my horror when I turned around and she was actually watching, "What Not To Where!" Oh, the shame! :-) Oh well, I like "Primeval" so I guess I have no room to talk.
Obviously I'm rambling so I'll sign off and go clean my surgical instruments. (remember the spleen!)
Not really.
She got to do a story time with her Montessori class via the Hopecam. That was very nice.
I went to Romp n' Roll to teach the Babies! preview class and it was very cool. There was also a Birthday Bash which was a total hoot!
Rachel sat on the couch and ate bon bons all day.
Not really. (She's dictating these things to me as she sits next to me)
She talked to insurance people trying to decipher whether or not the proton beam radiation procedure would be covered and where. Turns out MD Anderson IS in network but certain physicians (the important ones for us) are not. Shands in Gainesville, has a proton clinic in Jacksonville
(remember last time Rachel was dictating from behind/beside and I had to remove her spleen via her ear?!?!?!?)
So anyway, the Shands clinic in Jacksonville is in network as well. There are also hospitals in Boston, Indiana, and California. That's about all of that kind of news for now.
Rachel also went to the bank and deposited over $5000 into Charlotte's account! Thanks so much to everyone. The foundation plans are evolving ever so slowly but evolving they are.
She also got to get her toes done. Nice little distraction.
Aunt Phyllis and Meredith put up the special board next Cj's new table and that is looking very good. The rest of the house looks amazing under the cleaning and organizational skills of Phyllis.
Aunt Phyllis is an exceptionally intelligent and enlightened person. Imagine my horror when I turned around and she was actually watching, "What Not To Where!" Oh, the shame! :-) Oh well, I like "Primeval" so I guess I have no room to talk.
Obviously I'm rambling so I'll sign off and go clean my surgical instruments. (remember the spleen!)
Thursday, June 11, 2009
Every Day is a Bonus
We keep having big days but I guess they can't help but be big when every day is a bonus.
Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.
So we went to the vet! I mean, who is better at dealing with ticks than a vet?
Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)
We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.
So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.
It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.
We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.
For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)
So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.
That, by the way, has been a tremendous success attendance-wise. Very exciting.
I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.
Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!
Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)
Rachel and I will be first in line at the blood mobile which opens at 3pm.
As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.
Not necessarily important to tell us. Just do it. Please.
One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.
While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.
Thanks,
Rog
p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.
Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!
In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.
Thanks again to everyone for coming out for the fun!
So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.
FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.
Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.
Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.
I gotta go clean up the gym and head home so I"ll sign off...
Rachel
Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.
So we went to the vet! I mean, who is better at dealing with ticks than a vet?
Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)
We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.
So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.
It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.
We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.
For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)
So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.
That, by the way, has been a tremendous success attendance-wise. Very exciting.
I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.
Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!
Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)
Rachel and I will be first in line at the blood mobile which opens at 3pm.
As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.
Not necessarily important to tell us. Just do it. Please.
One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.
While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.
Thanks,
Rog
p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.
Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!
In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.
Thanks again to everyone for coming out for the fun!
So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.
FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.
Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.
Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.
I gotta go clean up the gym and head home so I"ll sign off...
Rachel
Tuesday, June 9, 2009
Staying Busy, Fundraising Update
Charlotte had a great day yesterday and a very good am this morning.
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.
Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.
One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.
So I got to go back out to deliver some more posters/flyers to friendly local businesses.
Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.
I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.
This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.
Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.
The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.
Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.
Keep cruizin' the CB sites. There are lots of amazing stories goin on!
Rog
Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.
We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.
We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)
Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.
We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.
Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.
We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.
If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.
Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.
Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!
So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.
Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.
Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?
Signing off...
Rachel
Monday, June 8, 2009
Yesterday was Another Busy Day
How can a day off be so exhausting? Yesterday was another busy day. We made it to the church picnic which offered wonderful food, fabulous fellowship, and good weather. The afternoon was spent going in different directions. I went with Amy down to Carytown for a little retail therapy and Roger and Charlotte headed up to Wyatt's birthday party. We met up near the end of it all.
Charlotte continues to do her "own thing" when it comes to social situations. She has always been this way (very independent girl that she is) but I think she is even more feeling the need to be independent. She definitely likes people and knows how to socialize but just doesn't always choose to. Sometimes I think the extra attention kind of gets on her nerves.
Anyway, we all came home and pretty much collapsed Sunday night and now it's off for another week. Amy is here for one more day. I am so happy that she was able to come out and see us. She is a dear friend from graduate school and it has been so good to reconnect after not really seeing each other for YEARS.
Gotta go be productive...and get coffee...
Rachel
Charlotte continues to do her "own thing" when it comes to social situations. She has always been this way (very independent girl that she is) but I think she is even more feeling the need to be independent. She definitely likes people and knows how to socialize but just doesn't always choose to. Sometimes I think the extra attention kind of gets on her nerves.
Anyway, we all came home and pretty much collapsed Sunday night and now it's off for another week. Amy is here for one more day. I am so happy that she was able to come out and see us. She is a dear friend from graduate school and it has been so good to reconnect after not really seeing each other for YEARS.
Gotta go be productive...and get coffee...
Rachel
Sunday, June 7, 2009
Damn, she's adorable!
Wow! What a day yesterday. As usual, our friends and family get here and we immediately make them work. Amy was no exception. She got here Friday morning and was watching Charlotte almost before she got her luggage.
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
Friday, June 5, 2009
Things are Going Very Well at Home
First off, Sorry about the lack of update. We are having trouble getting on to Caringbridge from home. Not sure why when the rest of our internet service at home works fine. Anyone have an insight into why that may be?
Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!
As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.
We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.
We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:
Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.
The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!
Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.
Gotta go get ready for "Big Friday!"
Rog
As a followup to the last post:
There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.
On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.
I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.
"Reynolds family,
Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.
It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.
Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.
I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.
Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.
www.paytonwright.org"
I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!
The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.
So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!
Thanks for everything past, present, and future!
Roger
Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!
As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.
We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.
We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:
Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.
The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!
Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.
Gotta go get ready for "Big Friday!"
Rog
As a followup to the last post:
There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.
On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.
I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.
"Reynolds family,
Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.
It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.
Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.
I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.
Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.
www.paytonwright.org"
I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!
The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.
So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!
Thanks for everything past, present, and future!
Roger
Wednesday, June 3, 2009
We Are HOME!
Charlotte had a great day yesterday. She was moved off the PICU to the regular peds unit (7 East) and spent most of the day entertaining herself and everyone else. By the time I got there in the mid afternoon, she was singing and just looking her adorable little self.
She has had two good sized poops in 24 hours (yay) so we are all pretty happy with the way things are moving (so to speak). She is also eating and drinking pretty well. We took her for a few walks and she was very motivated to go. In fact, we had to almost run to keep up with the IV pull coming behind her! She visited one of the playrooms to do some watercolor painting and we also had some visits from the hospital preschool teacher.
If all goes well, she should have a CT scan again sometime today (just to be sure everything is fine) and then she will go HOME. Hooray.
We still don't have official word from Dr. Khan yet about the next steps but I spoke with our nurse practitioner yesterday and she is in communication with him about where we go from here. Hopefully we should have some answers soon. I am guessing radiation will be the next step so it's just a matter of picking a date and starting talks with the radiation oncologist.
Gotta run and get ready for a busy day!
Rachel
Update: We are HOME!
She had a good night and we FINALLY got a CT scan at about 3 PM. Dr. Tye had basically given the clearance to go home before then but they had to do the CT just to be sure.
In the meantime, she had a productive afternoon that included a visit from Ms. Nodra, the Pre-K teacher on the unit. Ms. Nodra has had a chance to really get to know Charotte over the past few months so she brought some great activities. In about 45 minutes, Charlotte worked on letter sounds, letter names, puzzles, counting, writing (numbers and letters) and a few other great skills. It was good exercise for her brain.
We came home to a welcome home dinner over at Granny Dot's and now it's storming like crazy (yay for rain). Oh, she also called Gramps in Florida to wish him a Happy Birthday!
Grandpa and Grandma Bonita leave tomorrow to go back to TN. MUCH MUCH MUCH thanks to them for all the help this past week. We couldn't have done everything we've done without them.
We will go by Qdoba tomorrow to pick up our fundraising check from Lisa. No word on the final total but we are excited. Speaking of which, they are doing ANOTHER fundraiser at the Willow Lawn store tomorrow for an organization called Noah's Children. There is no burrito contest but it is another "portion of the proceeds for every meal goes to the organization" deal. If you are in the Willow Lawn area tomorrow, please come out to support them. They are a great restaurant with good food and they do a lot of good work for the community. I think the fundraiser is basically all day.
My good friend (make that GREAT friend) Amy will be flying in from Ohio on Friday to help us for a few days. Then Aunt Phyllis will come for a turn. It will be a busy few days with the Strawberry Faire on Saturday and a Southern Horizon gig for Roger. Not to mention our normal busy stuff. Hoping to make it to the church picnic Sunday too. We shall see!!
It will be nice to be home for a bit. I hope we hear from Oncology in the next few days with some answers.
Signing off...
Rachel
She has had two good sized poops in 24 hours (yay) so we are all pretty happy with the way things are moving (so to speak). She is also eating and drinking pretty well. We took her for a few walks and she was very motivated to go. In fact, we had to almost run to keep up with the IV pull coming behind her! She visited one of the playrooms to do some watercolor painting and we also had some visits from the hospital preschool teacher.
If all goes well, she should have a CT scan again sometime today (just to be sure everything is fine) and then she will go HOME. Hooray.
We still don't have official word from Dr. Khan yet about the next steps but I spoke with our nurse practitioner yesterday and she is in communication with him about where we go from here. Hopefully we should have some answers soon. I am guessing radiation will be the next step so it's just a matter of picking a date and starting talks with the radiation oncologist.
Gotta run and get ready for a busy day!
Rachel
Update: We are HOME!
She had a good night and we FINALLY got a CT scan at about 3 PM. Dr. Tye had basically given the clearance to go home before then but they had to do the CT just to be sure.
In the meantime, she had a productive afternoon that included a visit from Ms. Nodra, the Pre-K teacher on the unit. Ms. Nodra has had a chance to really get to know Charotte over the past few months so she brought some great activities. In about 45 minutes, Charlotte worked on letter sounds, letter names, puzzles, counting, writing (numbers and letters) and a few other great skills. It was good exercise for her brain.
We came home to a welcome home dinner over at Granny Dot's and now it's storming like crazy (yay for rain). Oh, she also called Gramps in Florida to wish him a Happy Birthday!
Grandpa and Grandma Bonita leave tomorrow to go back to TN. MUCH MUCH MUCH thanks to them for all the help this past week. We couldn't have done everything we've done without them.
We will go by Qdoba tomorrow to pick up our fundraising check from Lisa. No word on the final total but we are excited. Speaking of which, they are doing ANOTHER fundraiser at the Willow Lawn store tomorrow for an organization called Noah's Children. There is no burrito contest but it is another "portion of the proceeds for every meal goes to the organization" deal. If you are in the Willow Lawn area tomorrow, please come out to support them. They are a great restaurant with good food and they do a lot of good work for the community. I think the fundraiser is basically all day.
My good friend (make that GREAT friend) Amy will be flying in from Ohio on Friday to help us for a few days. Then Aunt Phyllis will come for a turn. It will be a busy few days with the Strawberry Faire on Saturday and a Southern Horizon gig for Roger. Not to mention our normal busy stuff. Hoping to make it to the church picnic Sunday too. We shall see!!
It will be nice to be home for a bit. I hope we hear from Oncology in the next few days with some answers.
Signing off...
Rachel
Monday, June 1, 2009
Stuck in Limbo Land
Good morning,
Charlotte had a pretty good night except for some drama taking vitals at about 4:30am. Her temp was registering 95 degrees so Nurse Suzie was trying to take it orally, which CJ was having none of. It had actually worked earlier in the night but I think it was only because she was unconscious.
After a bit, I just told Suzie not to worry about it since it wasn't an issue and not worth the stress. This morning's temp read 97 so we're cool.
We talked to Meredith via Skype/Hopecam as well as Reese and her mom. I think Reese was far more into it than Charlotte this time.
Rachel and I spoke with the pediatric psychologist, Dr. Bitsko this morning to kind of take a look at how we're doing. The bottom line being we're really tired and definately feeling the stress but not to the point where we need happy pills.
CJ had a small BM yesterday which was not much fun and nothing since. We tried to get her to take some Docusate (sp?) but that's about as easy as getting the cat to take his antibiotic (without the claws). We've asked about magnesium citrate which she will take and it seemed to work at home. Word on the street is that they have ordered the mag citrate. Now we are just waiting for the results of the CT scan and orders to take out the ventric. In fact, the neurosurgery resident just came in to check on her so we are moments away....
(The previous was mostly Roger's post from earlier today. Now I will put in my two cents):
First a big thank you to Grandpa and Juanita Bonita today. Roger and I had to fly in different directions this afternoon for Romp n' Roll so it was yet again good to have them around to keep Charlotte company. Plus, Juanita has been cooking away and keeping us well fed and the freezer is getting stocked with even more goodies!
I can't believe it's June! In some ways this has been both the slowest and fastest 6 months (or so) on record. I guess it's no wonder I'm drained (physically, emotionally, etc.). Dr. Bitsko made a point today that reallly hit home: for most families dealing with stuff like this at this point in the process, there is usuallly some stabilization. Families will still be in treatment but at least have a plan and a terminal goal for treatments. We are still stuck in limbo land. That is one of the most frustrating things right now. We started out running a marathon and they have changed the course.
It reminds me of the time Roger ran the DC Marathon right after the war in Iraq started. The organization organizing the race backed out but many people planned to run the race anyway. Because it was an unofficial volunteer effort, the runners had to run on the sidewalk instead of the street, there was minimal police coverage to handle traffic and they even changed the route. It was (to say the least) kind of a mess. Roger and I BOTH got lost in the process of the race and he didn't run a good time because of the delays. Does it seem even more ironic that he ran that race to raise money for St. Judes Childrens Hospital that year?
Anyway, so we are on this long course but we dont' know if we are running a marathon, an ironman, or a 100K race. We don't event know where the finish line is. It's a little...ok a LOT frustrating. Here's hoping we will get some answers soon regarding our next path.
Gotta run while we get a ventric out!
Rachel
Charlotte had a pretty good night except for some drama taking vitals at about 4:30am. Her temp was registering 95 degrees so Nurse Suzie was trying to take it orally, which CJ was having none of. It had actually worked earlier in the night but I think it was only because she was unconscious.
After a bit, I just told Suzie not to worry about it since it wasn't an issue and not worth the stress. This morning's temp read 97 so we're cool.
We talked to Meredith via Skype/Hopecam as well as Reese and her mom. I think Reese was far more into it than Charlotte this time.
Rachel and I spoke with the pediatric psychologist, Dr. Bitsko this morning to kind of take a look at how we're doing. The bottom line being we're really tired and definately feeling the stress but not to the point where we need happy pills.
CJ had a small BM yesterday which was not much fun and nothing since. We tried to get her to take some Docusate (sp?) but that's about as easy as getting the cat to take his antibiotic (without the claws). We've asked about magnesium citrate which she will take and it seemed to work at home. Word on the street is that they have ordered the mag citrate. Now we are just waiting for the results of the CT scan and orders to take out the ventric. In fact, the neurosurgery resident just came in to check on her so we are moments away....
(The previous was mostly Roger's post from earlier today. Now I will put in my two cents):
First a big thank you to Grandpa and Juanita Bonita today. Roger and I had to fly in different directions this afternoon for Romp n' Roll so it was yet again good to have them around to keep Charlotte company. Plus, Juanita has been cooking away and keeping us well fed and the freezer is getting stocked with even more goodies!
I can't believe it's June! In some ways this has been both the slowest and fastest 6 months (or so) on record. I guess it's no wonder I'm drained (physically, emotionally, etc.). Dr. Bitsko made a point today that reallly hit home: for most families dealing with stuff like this at this point in the process, there is usuallly some stabilization. Families will still be in treatment but at least have a plan and a terminal goal for treatments. We are still stuck in limbo land. That is one of the most frustrating things right now. We started out running a marathon and they have changed the course.
It reminds me of the time Roger ran the DC Marathon right after the war in Iraq started. The organization organizing the race backed out but many people planned to run the race anyway. Because it was an unofficial volunteer effort, the runners had to run on the sidewalk instead of the street, there was minimal police coverage to handle traffic and they even changed the route. It was (to say the least) kind of a mess. Roger and I BOTH got lost in the process of the race and he didn't run a good time because of the delays. Does it seem even more ironic that he ran that race to raise money for St. Judes Childrens Hospital that year?
Anyway, so we are on this long course but we dont' know if we are running a marathon, an ironman, or a 100K race. We don't event know where the finish line is. It's a little...ok a LOT frustrating. Here's hoping we will get some answers soon regarding our next path.
Gotta run while we get a ventric out!
Rachel
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